Children's Hospital apologizes to family of disabled girl for insensitive statement

By Tom Avril, Inquirer Staff Writer

Posted: February 16, 2012

Children's Hospital of Philadelphia apologized Wednesday for the way it had communicated with the parents of Amelia Rivera, the 3-year-old disabled girl whose quest for a kidney transplant has garnered national attention.

In a statement released with the approval of the Riveras, the hospital said it was reviewing its processes to ensure that it was "sensitive to the needs of all families."

In January, Joe and Chrissy Rivera said that a hospital physician had told them the girl should not have a transplant because of her mental disability.

Hospital officials initially declined to comment on the case, citing confidentiality rules, but said they do not take intellectual ability into account when determining transplant eligibility. Amelia suffers from a condition called Wolf-Hirschhorn syndrome, which causes a variety of developmental delays.

In the statement issued Wednesday, the hospital said: "As an organization, we regret that we communicated in a manner that did not clearly reflect our policies or intent and apologize for the Riveras' experience."

The statement was issued by Michael Apkon, the hospital's senior vice president and chief medical officer.

No decision has been made on whether the girl is a candidate for a transplant, according to the statement. Amelia's parents were told she would need one within six months to a year, they said in January.

In the statement, Apkon said the hospital appreciated the Riveras' role in helping to improve communication.

"We are completely committed to the careful review of our processes and written material to ensure that we are sensitive to the needs of all families, including the specific needs of families of children with disabilities," Apkon said.

The Riveras, of Stratford, Camden County, said in the statement that they welcomed the hospital's review.

"Despite an unfortunate encounter a few weeks ago, we hold the Children's Hospital of Philadelphia in high regard," Joe and Chrissy Rivera said. "We've had a three-year relationship with the hospital and are pleased with the care that Amelia has received. Our hope is that this experience will heighten the medical community's sensitivity to and support for the disabilities community."

The family is not seeking a kidney for Amelia from the national waiting list. The girl's parents have said they hope that a family member will prove to be a suitable match.